SMZL now Nodule in the spleen.

Hi Debbie Roxyrock sorry to hear about your concerns.

Completely different type of NHL for me…. but following my main 2 years treatment a post treatment scan showed ‘something’ new on my Lung.

A few tests and a biopsy found it was not my Lymphoma but an unexplained growth…… it’s coming up to 10 years and the lump is still there but has not been an issue.

Hi Mike 

Thank you. I think well I already have cancer in the spleen so I shouldn't really worry should I as it can't be any more worse than this !

Debbie x

Hi Debbie, I was diagnosed with SMZL in January, my spleen was the size of a large melon, plus I had all the lymphoma symptoms with massive weight loss. But sorry not hear of nodule in spleen. Hope all goes well when you see consultant. Will be so interested to know what consultant says. Good luck with it all. 

Hi Lyneal I got to see my consultant on Tuesday and a scan booked for the 29th.

He didn't seem too concerned but said let's see what happens with the scan and the spleen has also enlarged slightly but for me and this type of lymphoma this is normal. 

I was diagnosed in December 2020.

How are you doing ? Have you had treatment etc?

Please ask anything I will answer as best I can . There are also a fee others on here with this type of cancer and are all a great support. 

Debbie x

Hi Debbie, I had my last treatment end of October, my eight one. I am having a CT scan on 8th Jan to see if spleen has gone down to apple size as consultant calls it. I have had brilliant treatmenr from University of Wales hospital in Cardiff ,  been in Retuximab it wasnt  very  nice st first I had a terrible reaction to it and spent four days in hospital, but after the second treatment I was ok. Didn’t meet anyone in hospital who had SMZL so couldn’t compare with anyone. I feel really good now and have put two stone back on. Hope you are feeling ok not that many people this this form of blood cancer. 

Hi Lyn

Juse thort I’d pop on and say I was diagnosed with SMZL in 2014 and I’m still here️ Interesting to note that neither you nor Debbie had your spleens removed. Mine was removed straight away. Also interesting to note your reaction to retuximab..i had exactly the same reaction. Horrible drug. Glad to see you are doing well now. As Debbie said always happy to answer any questions. 

Ho Debbie, great to hear your Consultant doesn’t seem worried. Very reassuring. How are you feeling?

Hi Cattie

Yes im ok just had problems since the summer with infection after infection and I'm also waiting for a ct scan as the sinuses on the left still don't feel right and after 3 weeks of antibiotics it was time to stop and actually look at it another way. I also have a referral to ENT. The problem I have I also have Sarcoidosis and it first presented in the sinuses neck and eyes. So it been in active since summer 2011 but there was always a chance that the chemo could activate it but I'm keeping my fingers crossed that it hasn't because that isn't a great thi g to have on top of the lymphoma! 

Hope you are keeping well and looking forward to Christmas and the new year.

Lots of love 

Debbie x